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This one might be a little rough, so consider yourself warned. As so much we’ve seen and read and watched has been rough over the past few days . . .

Mark and I had that horrid conversation the other day, that I imagine many parents of the sick have had this weekend. It’s a rather gut-wrenching thing to bring up, but it inevitably comes at times like this: Which do you think is worse, losing a child to something like cancer or losing a child to something like a school shooting?

My answer was quick and unequivocal: School shooting, no question. Now let me be very clear — there is no good way to lose a child. NO good way. None of the options are remotely acceptable, nor should they be. But I have spent years envisioning what our last days and moments with Austin could be like and they’re pretty lovely. Not happy, not good, nowhere near okay. But they’d be filled with an overwhelming display of love. Every second would be spent holding and comforting, crying and remembering, loving and loving and loving.

I’m not stupid. I know it would be horrid. It would be painful and ugly and completely and utterly heartbreaking. But I would hold him. I would get as physically close as whatever machines and tubes he might be hooked to would allow, and I would wrap myself around him and hold him to the end, til he drew his last breath. And that would count for something.

The hardest thing for me watching and reading and thinking, endlessly thinking about these parents in Connecticut, was the fact that when they went to bed on Friday night, their babies were still lying on the floor of their classrooms, covered in blood and unmoved, untouched, as part of a crime scene. They never got to touch them again, to even see them again. Never, not even dead; the coroner said the parents were shown only photographs to spare them the agony of viewing the actual bodies in such a horrific state. But I think I would want to see it. I know that may not be wise, that it would be an unbearable image that I would never be able to shake from my mind. But so would the photo, really. I mean, is that truly any easier? I would want to touch my child’s body one more time. Touch their hair, stroke their cheek, kiss their lips, even cold and lifeless. I would not know how to go on without that.

Mark’s not so sure. He thinks the years of pain and suffering that children who die of cancer have to endure might be worse than the single moment of fear. He may be right, if you’re only thinking of the one who dies. I suppose he is right if we’re thinking only of the victims. Those children on Friday did not suffer long. But their parents will suffer forever.

I choose holding.

No, I’m not talking about LeBron James (again). And I’m not talking about whether or not we should build our own treehouse. I’m talking about our big decision. The decision. And we’ve made it.

Mark and I both feel comfortable leaving Austin’s kidney in until we have a real reason to take it out. We will continue to do abdominal ultrasounds once a month to watch for potential growth. And if anything shows up, we will obviously remove that kidney without hesitation. But it simply does not seem right to us to do something that will cause such immediate and long-lasting harm if we don’t absolutely have to.

Without doubt, we’ve given this great and careful consideration. We have the backing of Austin’s doctors, who have promised that if they believed we were doing something dangerous or too risky, they would intervene.  We know that, in addition to the obvious risk of cancer returning, there is also the possibility that the kidney will simply fail on its own before April 2012 (when Austin will finally be eligible for transplant). And of course, if that happens, we will remove the kidney without hesitation and start dialysis. In fact, we expect that. We’d both be surprised (and thrilled) if his kidney lasted for the next twenty months.  And if it doesn’t, well, yeah, we’ll be devastated but at least we’ll know that we’re doing these awful things because we have to.

The research and facts had us split down the middle so we relied heavily on our gut instincts to help solidify this decision. One key moment was imagining myself during the actual kidney-removing surgery.  I have paced those hospital hallways many a time while my child was laying on a sterile operating table with strangers in face masks opening up his small body. Six-hour, eight-hour, even ten-hour separations while Mark and I were filled with fear and anxiety. But every single time, I knew it had to be done. Not one of those surgeries was an option. For some of them, I was even excited: Go on, get that obscenely enormous tumor out of him. Or Come on now, good or bad, find us some solid information so we know what to do next.

But this? For this, I imagine myself second-guessing, triple-guessing, our decision every step of the way. I imagine myself at that moment of no return, racing back down the hallway and bursting through the doors through which no parent is welcome and insisting they stop. Stop, stop, you can’t do this to my child!

That is no way to think.

And then I imagine being at home the night before, climbing into bed with my boys and telling Austin what was set to take place the following day. How on earth could we explain such a decision to our happy, healthy, normal child? A boy who, despite all the extraordinary things he’s been through, still has completely ordinary expectations: He will go to school and have playdates, he’ll swim and learn to ride a bike, his body will function like everyone else’s. How could we look into his big brown eyes, again bordered by long dark lashes, and say, “Well, honey, this just seems like the right time to remove a part of you that you absolutely require in order to live a good life?”

No, no, that’s just not right. We will do what we have to do when we have to do it. And not one moment sooner.

Okay. That just about covers it: okay. It’s not fantastic like it was in January. And it’s definitely not horrible like the score from last Thursday. It’s okay. And that’s good enough.

I’ll give you the hard numbers, so you can make some sense of this roller coaster we’re forced to ride each day. Austin’s first GFR score following his December surgery was 83. Then it rose to 99 in January. Last week’s results? 30. Yeah, 30. Today it was 66.

This is pretty much what we expected.  I would have been disappointed if 66 was what we were told after last week’s test. It’s not great; it proves that we are indeed harming that kidney with chemo and radiation. But after what we thought we might be up against with a 30 (removing the kidney, starting a long two years of dialysis), 66 is good enough. It’s all relative after all.

We can continue with in-patient chemo as planned this Thursday, Friday and Saturday. The dose will have to be adjusted, as this particular drug is the hardest on the kidney. But we can carry on, at least through April, to the end of our scheduled 18 weeks.

And then? Well, and then we’ll have to sit down with our doctors and look long and hard at the benefits versus the risks of adding another 12-week round. We’ll have to make those awful decisions again, trying to peer into a cloudy crystal ball and predict whether more chemo will do more good or more harm, whether the cancer is gone or just in hiding, at what cost the kidney is worth saving, at what cost the cancer is worth attacking.

Not really looking forward to that. But for today, it’s good enough.

You should’ve seen me trying to put Austin down to sleep last night while he kept insisting, “We are NOT sleeping at the hospital!” It was after ten when he finally conked out only to be roused a few hours later and whisked off into the cold dark night. But he happily watched the empty streets pass by as we drove home at 1:15 am and quickly crawled into our own beds. There is something to be said for waking up in your house with your family all around you.

And after some moments of blissful normalcy this morning, I went to flush his PICC line . . . and it was blocked. Oh, I was so mad. SO mad. It is the worst feeling to sit there and attempt a necessary medical procedure on your child only to have it fail.  I tried a couple of times, afraid to push too hard; was able to draw blood off of it but only with a lot of resistance and air bubbles. Right as I was fuming about what to do next, the charge nurse from the floor called to see how everything was going. “Weeeellllll,” I began and she said, “Oh no.”

So we spent the next several hours down in the clinic, the absolute last place we wanted to be, waiting for the “central line Draino” to work its magic. Which it did, of course. And then, back home, finally home.

Speaking of performing medical procedures on your own child, his injections are becoming quite a production. He is fighting them tooth and nail, and has to be pinned down by me while Mark attacks him with that needle. It’s all sort of ridiculous and would almost be funny if it weren’t so awful. We’ve tried all the tricks recommended by professionals — have given him options (which leg, where we sit to do them), we’ve given him needles to stick into stuffed animals, and have explained over and over that we don’t want to hurt him but have to do this to make him better. But nothing works. He simply will not have it. And because he is squirming and tensing up his muscles, the damn shots hurt all the more.

Ah, how many more marbles indeed?

Did I mention that this is exhausting?

Austin has been extremely feisty today and feisty is a bit of a euphemism. He is full of anger and bluster at being “hooked up” to his IV and insists over and over at the highest volumes that we unhook him.

Last night, when he’d finished his chemo and was about to be switched back to his fluids, the nurse granted permission for him to “run a lap” unhooked. Of course, as soon as Austin had the promise of one lap, he insisted upon two and then requested “five hundred,” which is his go-to number for everything (as in “500 more minutes,” “500 more days” and “500 more cookies”). His lap, which is literally a lap from our room down the hall and around the nurse’s station, was a joy to watch. As was the lap after that and the one after that. His running was interspersed with  skipping and jumping, his hands held high in an Olympic-worthy victory stance, prompting several of us bystanders to say (with due irony), “Wow, can I have some of what he’s having?”

But all good things must come to an end and I eventually had to scoop him up and return him to his room and his dreaded IV pole. This child did not give up his freedom without a fight. A kicking, screaming, hair-pulling fight. He then tried to unscrew his PICC line from the IV himself, not exactly the safest thing for a three-year old to do.

He is just mad, sick and tired of being restrained, tied down, shackled to this damn disease. He feels good and he wants to run free, not be forced to wait for Mommy to maneuver the pole over the door jamb or need to untwist three times in order to reach his desired toy.

The scene was replayed today, both with me and with Mark. Again involving kicking and screaming and, this time, biting. Neither of us begrudge him his anger. He should be angry. This sucks, what’s happening to him. And yet we continue to hold him down and calm and quiet and soothe so we can stick him with another needle or pump his body full of another poison.

We are all sick of being shackled to this disease.

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